Thursday, January 9, 2014

And then it began to sink in....

I know there are plenty of people out there with Celiac Disease. It strikes 1 in 133 people, after all. But for me, this is all new. As with anything new that I don't fully comprehend, I research and research and research until I feel adequately knowledgeable.

I don't just research the basics; I dig. I want to know everything. I want to know if those small amounts of gluten found in "gluten-free" processed items will damage my son's intestines. And guess what? They, in fact, can. Now they say it depends on your own sensitivity; however, a Celiac is a Celiac. And some people with the disease show very few symptoms but have a increased risk of premature death regardless of loss of villous, the finger-like hairs that absorb nutrients, in the intestine. Why? Sure, you may not become malnourished, but you may very well be at risk for other side effect, including heart disease and liver damage.

Gluten-free processed products are rarely gluten free. It's true!

"You're probably wondering by now what all of this means to you — after all, if you're careful, you're probably following a strict gluten-free diet with no cheating, which means you're 100% gluten-free ... right? Well, no. It's just about impossible to be 100% gluten-free because "gluten-free" foods actually contain gluten. Grain products — those gluten-free breads, cereals, waffles and crackers — are the worst offenders."

So why is it considered "safe" for people with Celiac Disease? Because when they performed the studies, they used people with completely healed guts. However, that percentage is small, so says the University of Chicago's Celiac Disease Center:

"While healing may take up to 2 years for many older adults, new research shows that the small intestines of up to 60% of adults never completely heal, especially when adherence to the diet is less than optimal. The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine."

SIXTY percent! More than HALF of people adhering the what they believe is a gluten-free diet do not completely heal.

And that is why my reality just got a lot scarier. That is why I am realizing the extent of the disease and just how serious it is. Because honestly, I kind of looked at it as just a dietary change. It would suck, but all would be well. Not so fast, says the research.

"The researchers also found that those diagnosed before age 20 had nearly twice the risk of death, overall, but Ludvigsson says that, too, needs to be put into perspective. 'Kids are at increased risk of mortality,' he says. Even though the risk is increased, he says, it is still very low. The higher risk in those with less severe disease, Ludvigsson says, may be because of the untreated inflammation, as those patients may not be told to follow a gluten-free diet. The risk of death was found to be highest in the first year of follow-up, then decreased. Deaths were often from malignancy or cardiovascular disease, the researchers found. Exactly why isn't known, but Ludvigsson says that the longtime inflammation associated with celiac disease may boost the risk of other disorders, such as heart disease and cancer."

A risk of untreated Celiac Disease is Lymphoma. 

But what, exactly, does it mean to treat Celiac Disease? For me, it means doing all that I can to remove ALL gluten. I already knew this was going to be tough because gluten has to be replaced with something, and that something usually comes in the form of other processed chemicals. I'm already all kinds of crazy over processed chemicals. We know that. So I don't look at a box that says, "gluten free" and think, "Oh, that's safe." Nor do I take medical advice at face value. It's not that I don't trust doctors. I believe they are trying to do the best by the patient--there are exceptions--but they're human. And we're human. 

There is also a gluten-free craze going on in this country.

It's called supply and demand. The consumer wants to be gluten-free, the companies are going to find ways to profit from that by serving the need. The trouble is it hurts people who have REAL issues with gluten. It hurts people that NEED to be able to trust the products on the shelves. And, by nature, Americans are a trusting lot when it comes to food on the shelves. "If it says it's gluten-free, it must be true." No. No. No. It's not. Unless you're talking about products that are minimally processed and never contained gluten to begin with...think Masa Harina (made from corn). But of course, you then have to worry about whether it ENCOUNTERED gluten. In other words, has it been cross contaminated? Because guess what? That's no good either. 

So through the research, I have begun to realize this is NOT just a dietary change. This is, in fact, what I already knew. An autoimmune disease. It's a serious thing, and one that I can't take lightly. I have to be diligent in ensuring Ethan gets what he needs and avoids the things that will increase damage. I am his mother, after all, and it's my job to protect him; regardless of the difficulties it poses.

1 comment:

  1. I had no idea and Ethan is so lucky to have you as his mom! Pretty sad that gluten-free items on the market really are not what they say they are.